Yo soy La Lay

adventures in family, faith, and Down syndrome

On Words, take 2

Tessa is doing much better. She is not home yet, but will be soon.

This story is not about that.

Today, as I signed myself out of the Pediatrics ward, three nurses (none of whom were actually looking after Tessa) were discussing genetic testing.

Nurse #1: Well, my sister is having the tests. She’s older… She just wants to know.
Nurse #2: Yeah, I get that. I just didn’t.
Nurse #3: Well, I couldn’t have a kid like that. That’s just too much. I’m definitely testing someday.

This isn’t a piece about whether I’m for or against testing. It’s not about my feelings about abortion. It’s not meant to be religious or preachy… But it is a little bit about hurt feelings.

So to Nurse #3, a medical professional taking care of sick kids like mine, I just want to say the following:

Hey! Those “kids like that??” The ones you don’t want or can’t deal with? My baby, the one in room three that all you nurses oooh and aaah over… well, she is one of those kids. And I get it, Special Needs are challenging and overwhelming. But look around you. You are a nurse, frequently taking care of children like mine, and I can hear you. I can hear you saying that you’d rather not have a baby than have one like mine. And it hurts my feelings. Not because I think you are a bad person, but because you are caring for my child and you’ve put her into a box of unmanageable people. So please, when you decide to tell the world, in a giant open room filled with strangers, that you can’t deal with kids like mine, know that you are hurting a momma who believes very strongly that her child has a life worth living. You get an opinion. So do I. But a little caring and consideration for those who might have to hear you would go a long way. Because I was in a place I couldn’t leave. I couldn’t just switch to a different website or turn off the TV. Talk to your husband, your family, your girlfriends about it. Make your choice. But when you work, please be more sensitive. Because I love my girl. And I want the rest of the world to know that they can love her, too. She’s not “too much.” Just the way she is, she is perfect.

20140504-213406.jpg

15 Comments »

Upward movement

In the Hunger Games of pinkeye, I am still winning.

However, much to the delight of my husband, I woke up this morning without a voice. Not just a little hoarseness… this is full-on, my-lips-are-moving-but-no-sound-comes-out laryngitis. So that’s fun.

I spent my day with Tessa as usual, while The Pinkeye Crew hung out at my mom’s house. John is the only one who is still technically contagious, but I’m trying not to take too many chances and am staying away as much as I can!

At the hospital, Tessa was much more herself. She was ready to talk and play and roll onto her belly… The wires weren’t quite ready for that rolling, but she was pretty amused by the tangled mess that she could create. While her personality is slow to emerge, we already feel like she might be very social and a bit dramatic. This morning, if I wasn’t standing where she could see me, she complained until I came back into sight. High maintenance. At least she’s feeling better!!

I am super thankful today for the company of one of my dearest friends, Ashley. She and I got through our first year of teaching together and have remained friends since then. Tessa adores her and so does the rest of my family! Not only did she come to see me and the girls, but once Ellie went home for a nap and Tessa was calm in her bed, Ashley took me out for a margarita. It was a much needed break!! And while it must have been hard for her to hear what I was saying 96% of the time, she’s a great conversationalist and it’s nice to have someone to vent to.

As far as an update on Tessa, she’s making upward progress! When I went back tonight to kiss her goodnight, she was on the regular flow oxygen! That’s the last level to clear before she won’t need it anymore. They took out her NG tube (feeding tube) this morning. Most importantly, her status was downgraded tonight to a regular pediatrics patient instead of a PICU (intensive care) patient. Yay!! The means she lost a couple more wires and is starting to require less monitoring. Great progress for one day!!

20140503-211150.jpg

20140503-211216.jpg

1 Comment »

Breaking News!

In case you didn’t know… We got the results back from the virus panel to explain what horrific disease has caused this hospital experience. Turns out it’s a rhinovirus, AKA the common cold.

I’ll never be able to look at a snotty nosed kid on the playground with my child the same way ever again.

2 Comments »

The S*** Show

John says I shouldn’t swear on this blog. I’m not sure why… I’m not one to curse much in life anyway, but really, this week has earned a few choice words. I think you all understand if I call it sh***y, right? That’s a good compromise. 😉

We had a particularly unpleasant night with Ellie; one that involved a LOT of crying and smacks in the nose (from her to us!!) to avoid drops. We think they were accidental smacks… But she might have us all fooled.

Today I returned to work. We have been staying with my parents, as they live two minutes from Tessa’s hospital and we live 45 minutes away. So my usual 15-minute commute would instead be an hour. I was up, showered, ready. John wandered in with a scowl on his face.

Me: Rough night, man. Those drops are brutal.
Him: Yeah. Look at my eyes.
Me: You look exhausted! It’s only 5:30, go back to sleep!
Him: Maggie! Look. At. My. Eyes.
Me: S***.

Pink.

Cross another person off the list of helpers.

You know that feeling when someone sneezes on you and every tickle in your throat becomes an “oh my God, this is it, I’m getting the bug!” reaction? That has been me. All. Day. My eyes, which are white as white can be, albeit a little dry from the hospital air, literally tingle. It’s coming for me…

At least Tessa has had a good day. We’ve been lowered to a high-flow cannula rather than the Bubble CPAP. She took four ounces in a bottle and had a nice little bath. I’m here with her now, though I’m not touching her for fear of spreading The Disease. She is a sweet little peanut!!

20140502-153619.jpg

6 Comments »

PICU Day 2

We came in this morning to an angry baby.

Tessa basically has two cries – a weak, pitiful, won’t-you-please-make-me-happy sob and a full on, all-Hell-has-broken-loose scream. We were greeted with the latter today.

When we saw her, she stopped, smiled, and then started up again. The good news is that because of this (and because our room is directly outside of the nurse’s station and everyone was tired of enjoying her anger) they let us hold her.

20140501-100042.jpg

We also got to feed her a bottle because we thought she was sick of having an empty tummy. Just two ounces (and two great burps!) and she was exhausted, but content.

A little bit of normalcy. 🙂

This morning, they set her oxygen back up to 30%. The goal is to get it down to 21% on the CPAP so that we can start weaning from it and get her onto the high-flow oxygen cannula. There are three levels of oxygen input – four if you include total intubation – and CPAP is the highest that we are dealing with. It forces the lungs open more than the other types. Since she’s working so hard to breathe, the extra force of the CPAP is needed for now, but the oxygen need going up a little is a minor setback. The nurse says it’s pretty insignificant and we’re trying to see it that way as well. As the doctor reminded us today, this is just going to take time. A week? Maybe longer? We don’t know.

Ellie’s pink eye is improving. She hates the drops. Even my assurances that Doc McStuffins herself called me today to recommend them to help her feel better weren’t helpful. My next step is to put on a Doc McStuffins costume and convince her that way. Not really… But sometimes desperate times call for desperate measures. 🙂

9 Comments »

PICU

The smell first hit me as I was riding in the front seat of the ambulance.

Sterile, yet pleasant, like nurses and latex and clean receiving blankets covered with blue and pink feet.

We are back in the hospital.

As I wrote the other day, Tessa has had a cough and a fever for a couple of days.  We decided to take her to the doctor to have her checked out.  She seemed to be breathing a little faster than normal and had not been able to eat as well as she normally can.

In the doctor’s office, the nurse wanted to get an oxygen level reading on Tessa to make sure her levels were good.  This is a reading that we are very familiar with.  It’s the blue number on the monitor.  We know quite well that it needs to be in the upper 90s-100.

It’s never a good thing when the nurse tells you that she doesn’t think her machine is working right and wants to try a different one.

When she left the room, John peered at the number.  77.  We knew that we were hospital-bound.

The nurse practitioner that we were scheduled to see came in quickly, did another reading on the new machine and said that she was sorry to have to tell us this, but she was going to call 911 and have the paramedics take us to the ER because Tessa was in respiratory distress.  Soon her pediatrician was in the room explaining things to us in more detail.  She was working really hard to breathe; at one point they counted 100 respirations a minute.

Meanwhile, Ellie is sitting next to me playing with my iPod and announced that it was time to dance.

The paramedics loaded me up onto the stretcher, Tessa in my arms, and sent us to the hospital.  It’s kind of odd to be wheeled out through the waiting room holding a teeny baby in an oxygen mask.  People stare.  I totally would stare, too.

Once Tessa and I left, Ellie looked up at John with a little quiver of the lip and he told her that everything would be fine.  She responded, “Yeah, but where are those boys??” She was far more concerned about the paramedics being gone!

In any case, we ended up in a Pediatric ER and once we had her stabilized there, they transferred us over to the hospital where Tessa was born.  We wanted to be where her doctors were, where her records and history were already established.  On the way over, they put her into a little isolette (one of those incubator things) and she was MAD.  Literally and figuratively, Tessa does not like to be put into a box.  She likes to be free to be herself.  🙂

Here is what we know:  Tessa has pneumonia in her left lung.  We have her on an antibiotic to fight any bacterial infection that may be present and are testing for viral infections.  She does not have RSV.  They are doing a full panel to try to find the cause of her illness.  When we were leaving the ER and headed to the PICU, she was on 100% oxygen.  She’s now down to 65%.  They have her on a Bubble CPAP (same type of thing used for sleep apnea).  The goal today is to get her off the CPAP and onto the high flow oxygen.  She has been on an IV for nourishment and they will place an NG feeding tube today so that she can get some food in her tummy.  She has felt very, very hungry and, like her momma, when she’s hungry, everyone suffers.  A full tummy should bring back some smiles!

Also, Ellie has pink eye.

When it rains, it pours.

5 Comments »

Tubes

We had a follow-up visit with our Ear Nose Throat (ENT) doctor today. If you recall from my three-month update on Tessa, we were checking to see if the fluid in her ear would go away if treated with Nasonex.  A month has passed since then and the fluid is not gone. Because of this, sometime in the next couple weeks, Tessa will have her first surgery – she is having tubes put into her ears.  While they have her under the general anesthesia, they will also do the camera-down-the-throat check to confirm whether or not Tessa has laryngomalacia (see more here), reflux, or something else. It’s great that she is eating upright, but we are still hearing squeaky noises (called stridor) and she has a recurring cough/congestion that we want to check out. We are thankful to have a proactive doctor… and one who can do the procedure so quickly!  She will have the tubes put in AND the bronchoscopy (not sure how to spell that one!) in a procedure that only takes 10-15 minutes!!

2 Comments »

How Great Thou Art

My faith has always been quiet.  

Please don’t mistake my quietness for weakness.  While I tend to be am bossy in most other aspects of my life, for me, my faith life is one of quiet example rather than outward and vocal evangelism.  I don’t prefer to reference my faith in conversations with friends or strangers.  It’s not uncomfortable for me… I could probably write a thousand words trying to explain my behavior.  Suffice it to say that it’s just not my style.

However, as I sit in the early morning light of a peaceful Holy Saturday morning, I feel the itch to share one of my favorite hymns.  How Great Thou Art was one of my grandma’s favorites also.  In my memory, she (the woman for whom Tessa was named) also lived a devout, but quiet, Christian life.  I vividly remember this song playing in her home, surely recorded onto one of her millions of cassette tapes, though by which artist I have no idea. Today, I’m feeling so very blessed for these memories.

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

I haven’t been on a nature walk lately, but in my own home, I can see all of the blessings that God has provided us.  Dusty picture frames with captured memories of loving, joyful times… dirty dishes with remnants of delicious meals shared with each other… the lingering sweet smell of a bonfire on the back patio.  Every rowdy visit from the tickle monster and every cuddle on the couch with a sleepy child… None of these moments are guaranteed to us and yet, our life is full.

Where my heart dwells today, on this Easter weekend, is here:

And when I think of God, His Son not sparing;
Sent Him to die, I scarce can take it in;
That on the Cross, my burden gladly bearing,
He bled and died to take away my sin.

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: “My God, how great Thou art!”

I am overwhelmed today by the gift that God has given us.  To send His Son to die so that we may eternally live with Him in Heaven… what pain must have filled His heart to see His own sweet child suffer and die.  And still, what joy that we may all share in the bounty of His love!!  The blessings of my earthly home are countless and I cannot imagine what is in store for all of us when we are called home with Him. 

Then sings my soul, My Savior God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Savior God, to Thee,
How great Thou art, How great Thou art!

Image

1 Comment »

Belly Sleeper

I just went in to check on the girls and found Tessa asleep on her belly.

We did not put her down this way.

We knew that she could roll from back to belly, but she hasn’t ventured into the world of tummy sleeping until tonight.

Sweet Jesus, how am I going to get any sleep?!

I realize that all you moms with kids around my age are chuckling at me right now. My own mother always tells me “all YOU kids slept on your bellies and here you are today!” Yeah, yeah, yeah. But modern advances in medicine have changed a LOT of our ideas about infant safety. Take car seats for example. Have you ever seen a car seat circa 1985?? Yeesh.

20140415-205715.jpg

It seems to me that now, medical professionals subscribe to the idea that if you put your baby flat on her tummy and do not watch her every breath, she will die. And being a mother who wants the best for my child, I believe them… which is why this whole evening is so agonizing for me.

I did the same amount of agonizing with Ellie, but still feel like Tessa is different. Because she is less interested in rolling the other way. Because her breathing is loud still. Because dang it, I’m not ready for her to make this decision for herself! Ha. Leave it to my daughter to ignore her mother and do as she pleases at the ripe old age of not-quite-four months. Karma.

Parenthood is not for the weak-hearted.

3 Comments »

Normalcy?? I hope not.

Well, we thoroughly sucked at this week.

This was the first week since before Tessa that both John and I have been working.  I’m sitting at my kitchen table, surveying the disaster that has been created by the tornado of our life.  Strewn across the surface of our table are the remnants of not one, not two, but three McDonalds Happy Meals… there are empty Chinese cartons, a Chili’s To Go bag, a couple of squeaky styrofoam boxes from our favorite sushi restaurant…  and I haven’t touched my weight watchers app in seven days (thanks for sending me the lovely reminders, Weight Watchers App.  No, I haven’t tracked my weight lately, I know.  I don’t even want to know where that number stands after this week).

I often measure the stress level of our week by the number of meals we eat as a family, at our table.  We shoot for five.  This week, we were at one.  I think.  Then again, that may have been last week.   

After a weekend full of way-past-your-bedtime events, Ellie was in a funk.  There were lots of tears and sulking by the door to our garage, waiting for Daddy to come home to save her from Lord knows what.  Me, I guess.  One day, she spent 45 minutes carrying on about how she had no toys anywhere and how she wasn’t going to play ever again.  One night, there was vomit.  That was awesome.

If you are an unmarried reader… my unsolicited advice to you is that you find the partner who will laugh through the 1 AM, 2 AM, 3 AM vomiting toddler/hungry infant extravaganza and will thank you for being awake with him (as if there were really a choice).

There were meetings that ran long, a  list of school events to supervise, two therapy sessions, several hours of crying toddler to survive, a house to clean…

I actually broke down and called for an estimate on how much it would cost to have my house cleaned by professionals.  Sooooo not in the budget.  

In any case, we have learned the importance this week of my monthly meal plan (which was not in place this week… hence, the struggle… or so I tell myself) and our shared iPhone calendar.  While I don’t think that we will ever not be busy, we will get better at the adjustment to two in the working world, two in daycare.

Right?

Before I forget to record them, there were some fabulous bright spots to our week.  And I mean fabulous.

1. Tessa took almost all of her feedings today in an upright position.  HOLY Guacamole!!!!  Yes, yes, yes, THIS is what we have been praying for most.  

2. Ellie took a bath with zero tears.  I haven’t written much about this (it’s a “coming soon” post), but suffice it to say that bathtime has been a terrible experience for quite some time and we are finally getting our little fish back.

3. Tessa figured out how to roll from back to belly today.  She’s been on her side and aaaaaaalmost over for a little bit, but she finally got her shoulder to cooperate.  I’m SO proud of her… and SO terrified to walk into her room and see her sleeping on her belly.  I’m not ready for that!

Leave a comment »